Special needs family homeless & battling mold
Donation protected
I imagine what we are going through and I think like it’s almost unbelievable that all of this can happen to us at once but then when you live it, realize it, some days I don’t even have the words what I do know is god is with us otherwise my baby boy wouldn’t be here, I wouldn’t wake up with the strength to tackle another day. I’d like to explain it to you shortly but it’s so much with that being said I would love if you could stick around and take a look into what our lives look like and I pray you can help us get through the most horrible part of our lives a place we never ever even imagined in 100000 years we would be.
Before I even start, one thing I can tell you is that I’m not part of the evil in this world and gosh do I know there is so much. It scares me for my babies. As I explain my story I ask you to remember that.
Our life turned upside down 09/25 when I got home from work and my baby boy was not himself I called the ambulance and he was transported to the local hospital until they were able to get him stable enough for transfer. He got transferred to the university of Chicago PICU. Still at this time I was unaware of how bad it was. He then at that point got diagnosed with double pneumonia, with large pleural effusions and double lung collapse. It wasn’t even 24 hours later he was maxed out at Bipap desatting with oxygen in the 70s and dropping and respiration rate of 66 and he experienced ARDS (acute respitory distress syndrome) he needed life saving treatments and emergency intubation. It took 5 hours. Those 5 hours were the longest hours of my entire life.
We have two special needs children. Matthew who we are talking about here and who you see above and Jayden. We also have two little girls 5 years old (she says mom I’m 5 and a half) & lastly our 20 month old. My children had been placed in an induced coma before for status epilepticus but nothing ever can compare to this. The next 57 days after that will never just be a memory it was the worst parts of our lives that we still yet have to recover from not just us as the parents but our children. Matthew cannot attend school until his lungs heal from ARDS which can take anywhere from 6months-2years. He’s still in a wheelchair to this day he has not fully regained his strength 3 months later and he works so so very very hard in day rehab.
Originally when Matthew was intubated he was already at a peep of 10 this is higher than they expected it to be but he experienced respiratory failure. Every day he wasn’t getting better but actually he was getting worse. They ran every single panel viral & bacterial several times. Nothing. He was on 3 of the strongest antibiotics from infectious disease without improvement. One day I was outside I was talking on the phone to my grandma. She said you guys are always sick why don’t you test the rental for mold? I said do you really think? She said she had a doctor friend in Arizona who she spoke to and she said it reminded her of that case. I immediately hired Midwest Aerobiology & Labs. When I got the results back it saved my boy but to find out how dangerous, silent, and invisible mold can be to the point it showed up on that test one of the highest Darryl our analyst had ever seen. The home I paid $2000 a month for perfectly always on time for 4.5 years (renting) it almost killed my baby.
Next thing your thinking lawsuit right because the landlords did nothing! We have an attorney but things like this will take years. Next thing you could be thinking, isn’t the landlords supposed to put you somewhere yes they were. They said their insurance doesn’t cover that. I called my renters insurance. They called it a case of landlord negligence and denied the claim. October 31st we had to gather what we could and leave almost everything behind. Every toy. Every mattress our lives. Instead of being trick or treating with our other 3 because Matthew was finally starting to recover at this point and was in (inpatient rehab) at Shirley Ryan ability lab.
Then came the point November 11th they wanted to discharge Matthew and we had absolutely nowhere to go. We had called every single shelter, 311, 211, Catholic charities,church, shelter became not an option by doctor order due to Matthew having ARDS his lungs are still very very sick again he cannot even attend school for the rest of the school year and him being in a wheelchair was a liability risk and him getting sick before his lungs recover could absolutely not turn out the way any of would hope due to his lung damage.
The boys have eses epilepsy, Lennox guastat syndrome and a genetic disorder of RBFOX1 causing a neurodegentrarive disease. More or less this means constant regression.
Matthew used to talk, he used to eat by mouth, he used to run, he was your a typical boy. Jayden as well. Then the disease is slowly taking all of that away. So they were already sick, Matthew was already special needs the landlords knew this! They knew how critical he was. They did nothing. All this did was make our already horribly difficult life harder. Of course during that hospital stay I stayed at the hospital during this I lost my job. No FMLA, no benefits I’m a self employed finance manager for used car dealership. Dad he was always the stay at home dad while I worked.
Thankfully Matthew got out just in time to celebrate his 12th birthday and we are so entirely blessed. He still attends day rehab 4 days a week 3 hours each time. We have one vehicle, one vehicle that can’t even pass emissions to get a sticker. So our vehicle already needed extensive work, one day I’m sitting outside rehab I’m sitting there replying to people on the boys prayer page and suddenly this kid just comes up and slams into my vehicle two days before thanksgiving I feel like at that time that literal second I had broke over something simple but it’s just I truly thought nothing could get any worse and l knew a hit like that with the work it already needed was going to destroy it. Until now (his insurance isn’t accepting liability and it’s a huge fight) The police do have him as unit 1 on the report and I do have photos but there is my word against his and he is now saying I was backing up. I was parked.
Anyways then I had finally convinced my job to please give me another chance even though part time it would work around Matthews rehab schedule. The very next day I got a call that Jayden (our other special needs boy) had two seizures at school and stopped breathing next thing you know I’m at the hospital with him his birthday was December 2nd and he spent his birthday in the hospital but I promised him we will recelebrate. I’m so thankful for our prayer warriors who helped us be able to afford this Airbnb for the month of December.
To say the least I am afraid. I’ve never felt more defeated. I try and it seems everything I try I hit a dead end. I don’t know what to do I’m lost and I can truly say for the first time in my life I feel like a failure as a mother I have tried and tried and tried and I can’t take this illness from them, I can’t stop from what feels like the world is crashing down, I couldn’t stop us from having to lose our home, I can only desperately try to give them a sense of normal.
It is the most embarrassing thing to sit here and type this and ask for help. I’ve always thought I would be the one giving back I’ve always had this need to want to help others even when Matthew was in Shirley Ryan ability lab inpatient there was a homeless person I saw every single day and Starbucks wouldn’t let him in. It was cold so I said he’s with me I grabbed him food and something to drink and I prayed and spoke with him. Sometimes that’s all people need is to know that they matter. I could tell that’s what he needed. He also helped me because I had never felt more alone dad was with the other 3 and I was by myself with Matthew every single day by his side. All the resources the hospital gave me even though we couldn’t get shelter under doctor order we ended up finding him a wonderful shelter to go to. The resources aren’t how they used to be is what I continue to hear whenever I reach out. I’m not mad I’m sad I’m disappointed I’m upset with myself how did I not know sooner. Why didn’t I know we were always sick and connect the two. My gosh.
Either way a little about me I became a mom very early and worked my butt off to become a finance manager to make sure I could provide a better life for my babies than I ever had. In 3 years I moved my way up from cashier in a car dealership to finance manager I’m 29 now. Never in a million years did I expect this. I can’t tell you how many times I’ve lost jobs due to the boys getting sick because if you don’t have a finance manager you can’t sell cars. I get it. Dad would stay home with the other 3 while I went to the hospital with the other child (a parent always has to be present during eeg monitoring to record and push the button to show seizure like activity). Illinois is one out of 4 states that doesn’t pay you as a parent to be able to be paid caregiver for your child. You can be paid caregiver for your elderly mom, grandma, elders but not for your child no a nurse has to get paid and come into your home 12 hours a day. We lost all nurses in may of 2022 when the hospitals became so aggressive is there pay that at home nursing wasn’t even a thing every time I called DSCC to get an update it was just they couldn’t find anyone. Because of the boys complexity they didn’t qualify for a cna but needed a LPN or RN. We lost our nurse of 3 years to the hospital Covid changed everything.
Needless to say we desperately need help. We lost everything we’re staying in an Airbnb in Gary. We lived in a little country town that we walk 5 minutes and we were playing with our babies at the golf course. We don’t need luxury we just want a home, we need normal, we need enough to atleast cover another month at an Airbnb and vehicle repair expenses to get a job that will work around Matthews rehab schedule that will show income so we can rent again. Credit isn’t an issue, nothings an issue our life was hard before but it was manageable we had a home we had working vehicles then suddenly it was like September came and the world just came crashing down and hasn’t stopped since. You know why I’ve kept my faith? You didn’t see those x rays, my baby being here is gods work. Prayer is real and no matter what you may be going through I know there is someone out there that has it worse than us and I pray to help them someday.
To finalize, I just want to say thank you for reading our story, if your able to donate thank you so so very much even the smallest amount helps more than you could ever imagine and thank you wouldn’t even be the proper enough word, please share with your family and friends, and please add us to your local prayer group and anyone else going through a hard time reading this remember god is with you we may not know the reasoning for this or that right now but I certainly know god has a plan for me but I keep heading in the wrong direction and that’s why I keep hitting walls. Keep praying, keep your faith and I think there’s a place you can send your contact info I will also pray for you. Thank you so so very much again and god bless.
Before I even start, one thing I can tell you is that I’m not part of the evil in this world and gosh do I know there is so much. It scares me for my babies. As I explain my story I ask you to remember that.
Our life turned upside down 09/25 when I got home from work and my baby boy was not himself I called the ambulance and he was transported to the local hospital until they were able to get him stable enough for transfer. He got transferred to the university of Chicago PICU. Still at this time I was unaware of how bad it was. He then at that point got diagnosed with double pneumonia, with large pleural effusions and double lung collapse. It wasn’t even 24 hours later he was maxed out at Bipap desatting with oxygen in the 70s and dropping and respiration rate of 66 and he experienced ARDS (acute respitory distress syndrome) he needed life saving treatments and emergency intubation. It took 5 hours. Those 5 hours were the longest hours of my entire life.
We have two special needs children. Matthew who we are talking about here and who you see above and Jayden. We also have two little girls 5 years old (she says mom I’m 5 and a half) & lastly our 20 month old. My children had been placed in an induced coma before for status epilepticus but nothing ever can compare to this. The next 57 days after that will never just be a memory it was the worst parts of our lives that we still yet have to recover from not just us as the parents but our children. Matthew cannot attend school until his lungs heal from ARDS which can take anywhere from 6months-2years. He’s still in a wheelchair to this day he has not fully regained his strength 3 months later and he works so so very very hard in day rehab.
Originally when Matthew was intubated he was already at a peep of 10 this is higher than they expected it to be but he experienced respiratory failure. Every day he wasn’t getting better but actually he was getting worse. They ran every single panel viral & bacterial several times. Nothing. He was on 3 of the strongest antibiotics from infectious disease without improvement. One day I was outside I was talking on the phone to my grandma. She said you guys are always sick why don’t you test the rental for mold? I said do you really think? She said she had a doctor friend in Arizona who she spoke to and she said it reminded her of that case. I immediately hired Midwest Aerobiology & Labs. When I got the results back it saved my boy but to find out how dangerous, silent, and invisible mold can be to the point it showed up on that test one of the highest Darryl our analyst had ever seen. The home I paid $2000 a month for perfectly always on time for 4.5 years (renting) it almost killed my baby.
Next thing your thinking lawsuit right because the landlords did nothing! We have an attorney but things like this will take years. Next thing you could be thinking, isn’t the landlords supposed to put you somewhere yes they were. They said their insurance doesn’t cover that. I called my renters insurance. They called it a case of landlord negligence and denied the claim. October 31st we had to gather what we could and leave almost everything behind. Every toy. Every mattress our lives. Instead of being trick or treating with our other 3 because Matthew was finally starting to recover at this point and was in (inpatient rehab) at Shirley Ryan ability lab.
Then came the point November 11th they wanted to discharge Matthew and we had absolutely nowhere to go. We had called every single shelter, 311, 211, Catholic charities,church, shelter became not an option by doctor order due to Matthew having ARDS his lungs are still very very sick again he cannot even attend school for the rest of the school year and him being in a wheelchair was a liability risk and him getting sick before his lungs recover could absolutely not turn out the way any of would hope due to his lung damage.
The boys have eses epilepsy, Lennox guastat syndrome and a genetic disorder of RBFOX1 causing a neurodegentrarive disease. More or less this means constant regression.
Matthew used to talk, he used to eat by mouth, he used to run, he was your a typical boy. Jayden as well. Then the disease is slowly taking all of that away. So they were already sick, Matthew was already special needs the landlords knew this! They knew how critical he was. They did nothing. All this did was make our already horribly difficult life harder. Of course during that hospital stay I stayed at the hospital during this I lost my job. No FMLA, no benefits I’m a self employed finance manager for used car dealership. Dad he was always the stay at home dad while I worked.
Thankfully Matthew got out just in time to celebrate his 12th birthday and we are so entirely blessed. He still attends day rehab 4 days a week 3 hours each time. We have one vehicle, one vehicle that can’t even pass emissions to get a sticker. So our vehicle already needed extensive work, one day I’m sitting outside rehab I’m sitting there replying to people on the boys prayer page and suddenly this kid just comes up and slams into my vehicle two days before thanksgiving I feel like at that time that literal second I had broke over something simple but it’s just I truly thought nothing could get any worse and l knew a hit like that with the work it already needed was going to destroy it. Until now (his insurance isn’t accepting liability and it’s a huge fight) The police do have him as unit 1 on the report and I do have photos but there is my word against his and he is now saying I was backing up. I was parked.
Anyways then I had finally convinced my job to please give me another chance even though part time it would work around Matthews rehab schedule. The very next day I got a call that Jayden (our other special needs boy) had two seizures at school and stopped breathing next thing you know I’m at the hospital with him his birthday was December 2nd and he spent his birthday in the hospital but I promised him we will recelebrate. I’m so thankful for our prayer warriors who helped us be able to afford this Airbnb for the month of December.
To say the least I am afraid. I’ve never felt more defeated. I try and it seems everything I try I hit a dead end. I don’t know what to do I’m lost and I can truly say for the first time in my life I feel like a failure as a mother I have tried and tried and tried and I can’t take this illness from them, I can’t stop from what feels like the world is crashing down, I couldn’t stop us from having to lose our home, I can only desperately try to give them a sense of normal.
It is the most embarrassing thing to sit here and type this and ask for help. I’ve always thought I would be the one giving back I’ve always had this need to want to help others even when Matthew was in Shirley Ryan ability lab inpatient there was a homeless person I saw every single day and Starbucks wouldn’t let him in. It was cold so I said he’s with me I grabbed him food and something to drink and I prayed and spoke with him. Sometimes that’s all people need is to know that they matter. I could tell that’s what he needed. He also helped me because I had never felt more alone dad was with the other 3 and I was by myself with Matthew every single day by his side. All the resources the hospital gave me even though we couldn’t get shelter under doctor order we ended up finding him a wonderful shelter to go to. The resources aren’t how they used to be is what I continue to hear whenever I reach out. I’m not mad I’m sad I’m disappointed I’m upset with myself how did I not know sooner. Why didn’t I know we were always sick and connect the two. My gosh.
Either way a little about me I became a mom very early and worked my butt off to become a finance manager to make sure I could provide a better life for my babies than I ever had. In 3 years I moved my way up from cashier in a car dealership to finance manager I’m 29 now. Never in a million years did I expect this. I can’t tell you how many times I’ve lost jobs due to the boys getting sick because if you don’t have a finance manager you can’t sell cars. I get it. Dad would stay home with the other 3 while I went to the hospital with the other child (a parent always has to be present during eeg monitoring to record and push the button to show seizure like activity). Illinois is one out of 4 states that doesn’t pay you as a parent to be able to be paid caregiver for your child. You can be paid caregiver for your elderly mom, grandma, elders but not for your child no a nurse has to get paid and come into your home 12 hours a day. We lost all nurses in may of 2022 when the hospitals became so aggressive is there pay that at home nursing wasn’t even a thing every time I called DSCC to get an update it was just they couldn’t find anyone. Because of the boys complexity they didn’t qualify for a cna but needed a LPN or RN. We lost our nurse of 3 years to the hospital Covid changed everything.
Needless to say we desperately need help. We lost everything we’re staying in an Airbnb in Gary. We lived in a little country town that we walk 5 minutes and we were playing with our babies at the golf course. We don’t need luxury we just want a home, we need normal, we need enough to atleast cover another month at an Airbnb and vehicle repair expenses to get a job that will work around Matthews rehab schedule that will show income so we can rent again. Credit isn’t an issue, nothings an issue our life was hard before but it was manageable we had a home we had working vehicles then suddenly it was like September came and the world just came crashing down and hasn’t stopped since. You know why I’ve kept my faith? You didn’t see those x rays, my baby being here is gods work. Prayer is real and no matter what you may be going through I know there is someone out there that has it worse than us and I pray to help them someday.
To finalize, I just want to say thank you for reading our story, if your able to donate thank you so so very much even the smallest amount helps more than you could ever imagine and thank you wouldn’t even be the proper enough word, please share with your family and friends, and please add us to your local prayer group and anyone else going through a hard time reading this remember god is with you we may not know the reasoning for this or that right now but I certainly know god has a plan for me but I keep heading in the wrong direction and that’s why I keep hitting walls. Keep praying, keep your faith and I think there’s a place you can send your contact info I will also pray for you. Thank you so so very much again and god bless.
Organizer
Jeannette Farris
Organizer
Crete, IL